No doubt about it, brain injury changes you. In some cases, a lot.
Your personality can change dramatically… like mine did after my mTBI in 2004. I went from being a positive, pro-active individual with an indomitable spirit, to an anxious and easily upset “hothouse flower” who flew into a rage over every little thing. I went from being attentive to everything others needed from me, and going out of my way to ensure they were protected and well-cared-for, to being selfish, self-centered, and oblivious to what other people wanted and needed.
Granted, there were other mitigating factors that came into play, but the difference between pre-TBI and post-TBI was remarkable.
I can say that now with some measure of calm, because after 12 years of really working on my recovery, I’ve made huge strides and am better off — all across the board — than I can ever remember being.
But back in the day, my recovery wasn’t a foregone conclusion. It was questionable, in fact.
The thing that made the difference for me was not giving up. Having help, in the form of a neuropsych who would just talk me through my week, every week, and let me sort things out. They would question me, when I was on the verge of going off the rails, helping me sort through the mass of details to find a common thread that I could hang onto. For just one more day.
Just one more day.
And over the years, one more day led to another and another and another, and those days became weeks and months and years… till I stopped to catch my breath and look around. And I realized I had come through on the other side.
Everybody’s trajectory is different, of course. And along the way, we need to adjust. I had to let go of some dreams I’d had for such a long time. I had to let go of progress I’d made before my accident. I had to settle into a different life path. And I had to make peace with my losses. But that all led me to the light in the distance. And in the end, will not having every single dream come true make me less happy, less productive, less capable?
Nope. That’s just how things go. I’ve accepted that, now. And it’s good.
The thing is, if I’d listened to the experts, early on, I probably wouldn’t have gotten here. I was told:
I was exaggerating my issues. I wasn’t. If anything, I was understating them.
Getting hit on the head wasn’t a big deal. NO, it was a big problem. It nearly cost me everything I’d worked so hard for.
My brain would just recover on its own. It didn’t. I had to work with it constantly to get it to a place I was happy with. It took years to do that.
TBI recovery doesn’t happen. Obviously untrue. It did happen.
These are just a few of the things I either read or was told. And I didn’t buy any of it. I knew I was in trouble, and I did everything in my power to fight for what I needed. What my brain needed. What my spouse and the life I’d built up all needed.
So, let’s rethink brain injury, shall we? Yes, it’s serious. Yes, it takes a toll. But the damage is not irreversible, and it can be followed by incredibly recovery.
How amazing would it be if everyone understood that.
2. Since your old habits don’t quite work well enough, you need to TAKE CONTROL of your brain and get it to think through the things you are going to do.
Your BRAIN no longer does its job well enough on automatic pilot.
You may think it does, but it doesn’t. All those years your brain invested in learning how to do things… well, the things it learned about “the right way to do things” has changed. The connections and pathways that your brain was used to using to get from Point A to Point B… well, those old highways and byways may have been “washed out” by your TBI, so all the signals traveling through your brain need to find new ways to do their job.
Now, your MIND has to make sure it does its job properly, whenever you do anything in which the results are important.
You can’t just rely on your brain to be on autopilot. You have to use your MIND. And you have to stay engaged. You have to pay attention. The brain can do its job, but it needs to be watched — cared for — tended. And that’s the job of your mind.
Any time you need your actions or your words to have quality, your mind has to make sure that your brain produces quality at every step.
Your mind is in your control. Your brain … well, not so much. Some people make no distinction between brain and mind, but for our purposes here (and for Give Back purposes), we need to make that distinction. The brain is the organ, the result of a whole lot of physical and neurological processes. The mind is the result of the brain’s activity and your presence… of mind.
It’s as if your mind now has to be the boss.
Yep. It does. It has to run the show. You can’t rely “mindlessly” on your brain to just do its job as usual. Because the ways that it used to do things have altered. And that change is permanent. Does that mean you can’t create new ways and pathways for your brain to do things differently? NO. That’s the point — it can change and learn and grow. But it’s used to doing things the same-old-same-old, and that’s not going to work for you anymore.
You need to be MINDFUL so that you can be an effective boss.
Give yourself a promotion. Make yourself the CEO of your own life. You’ve got to run things, now. Not just your autopilot brain, but your powerful mind, which learns and grows and changes constantly and acquires skill over time. Mindfulness, paying attention, properly managing your energy and frustrations… you’ve got a new job.
TBI recovery (even for the so-called “mild” type) is an ongoing process which involves your whole self. Take heart. There is a way forward. I found my own way, and you can too.
In 2013,1 about 2.8 million TBI-related emergency department (ED) visits, hospitalizations, and deaths occurred in the United States.
TBI contributed to the deaths of nearly 50,000 people.
TBI was a diagnosis in more than 282,000 hospitalizations and 2.5 million ED visits. These consisted of TBI alone or TBI in combination with other injuries.
Over the span of six years (2007–2013), while rates of TBI-related ED visits increased by 47%, hospitalization rates decreased by 2.5% and death rates decreased by 5%.
In 2012, an estimated 329,290 children (age 19 or younger) were treated in U.S. EDs for sports and recreation-related injuries that included a diagnosis of concussion or TBI.3
From 2001 to 2012, the rate of ED visits for sports and recreation-related injuries with a diagnosis of concussion or TBI, alone or in combination with other injuries, more than doubled among children (age 19 or younger).3
What are the leading causes of TBI?
In 2013,1 falls were the leading cause of TBI. Falls accounted for 47% of all TBI-related ED visits, hospitalizations, and deaths in the United States. Falls disproportionately affect the youngest and oldest age groups:
More than half (54%) of TBI-related ED visits hospitalizations, and deaths among children 0 to 14 years were caused by falls.
Nearly 4 in 5 (79%) TBI-related ED visits, hospitalizations, and deaths in adults aged 65 and older were caused by falls.
Being struck by or against an object was the second leading cause of TBI, accounting for about 15% of TBI-related ED visits, hospitalizations, and deaths in the United States in 2013.
Over 1 in 5 (22%) TBI-related ED visits, hospitalizations, and deaths in children less than 15 years of age were caused by being struck by or against an object.
Among all age groups, motor vehicle crashes were the third overall leading cause of TBI-related ED visits, hospitalizations, and deaths (14%). When looking at just TBI-related deaths, motor vehicle crashes were the third leading cause (19%) in 2013.
Intentional self-harm was the second leading cause of TBI-related deaths (33%) in 2013.
That, to me, is a pretty big deal. And that’s not even counting the costs of concussion to all the people who sustain them, as well as the friends, family members, co-workers, and employers involved.
While other diseases, injuries, conditions, etc. have “epidemic” status and get a whole lot of attention and visibility drawn to them, concussion / TBI still lurks just under the surface. Maybe because it’s so scary for people. Maybe because it’s so invisible. Maybe because people still have this perception of TBI as being “just a clunk on the head” that’s no big deal.
Guess what — it is a big deal. And it affects your whole person.
So, maybe people really do get that. They just don’t have the ways of thinking/taking about it in a productive way.
Maybe we just aren’t properly equipped.
I’m not sure there’s ever a way to properly equip people to confront their deepest, darkest fears. But the right information goes a long way.
Also, having standards of care, getting the word out on a regular basis about how to understand and handle concussion / TBI, and not treating it like a taboo that can’t be discussed in polite company… that would help, too. Heck, if we could just discuss it, period, that would be a positive development.
Well, that’s what this blog is about. Sharing information, as well as discussing what it’s like from a personal point of view. It’s important. And it doesn’t happen that often, in a productive and pro-active way. At least, not compared to the frequency with which it happens.
It never ceases to amaze me, how little is generally known about concussion / mild TBI. Either it’s dismissed, or it’s viewed with a combination of fear and horror. Just mentioning to someone that you’ve had one (or two, or — like me — 9) can seriously alter their perception of you.
I’ve had conversations with people who I thought would “get it”. But as soon as I mentioned my history of mild TBI, their manner changed from collegial to guarded. As though they were waiting for me to slip up or do something stupid.
Eh, well. Whatever. I can’t get too bent out of shape about it. After all, it’s largely not their fault. We just don’t have a lot of good information about concussion / mild TBI. Nor do we have stellar management practices. It’s either negligent, or it’s over-protective. And unless I’ve been under my rock too long (always a chance of that), I don’t believe there are widely recognized, standardized best practices for docs and patients, alike.
We’re getting there. But we’re not there yet.
That being said, I’m working on updating my series 10 Things I Wish Someone Told Me After My Concussion(s) I collected 10 posts in one place, and I also published it as an eBook, to give people more access to it. But looking at it last night, when I had some time to myself, I see I really need to both expand it, as well as create a more condensed, high-level version of it.
The point of the collection is to let people know they’re not alone – and to share with them things that really would have helped me, had I known about them sooner. When you hit your head hard enough to alter your consciousness, it can impact you heavily. It might not be obvious from the outside right away, and it may take a few hours or days or weeks (sometimes even months) for things to start to get weird, but something actually has changed inside your skull.
We need to know this. Not just from doctors when we think to consult with them. Not just from experts, who have all the domain expertise. But in the general population. That’s why I’m expanding the book into print — because I want to get it out to libraries, as well as to individuals. It’ll be on Amazon, just like the eBook is.
I’ll be updating this site, too, as I go along, adding more information to help clarify. This is important. People need to know. It can’t protect them from that first impact, but it might just help them deal with that — and possibly avoid the next impact that becomes even more likely when you’re already concussed.
Have you had a concussion? A mild TBI? If you’ve recently had a head injury, you’re not alone. Millions of Americans have a brain injury every year. Sports, falls, assaults, auto accidents, and more all contribute. To take care of yourself and get better, there’s a lot you need to know.
What can you expect? Why do you feel so weird? Why are you getting so angry? How do you take care of yourself? How long will it take for your symptoms to clear up? Will this fatigue ever end?
This “beginner’s guide to concussion” gives you an insider’s view of what it’s like, what you can expect, what you might experience, and why you feel the way you do. Written by a multiple mild TBI survivor with decades of recovery experience, “10 Things I Wish They’d Told Me After My Concussion(s)” fills in the blanks of this puzzling condition and talks about anger, fatigue, frustration, the neurological basis of your situation, and more. There is always more to learn with concussion. And this book is a place to start.
I had a pretty good weekend. Restful. Downtime. I did some things on Saturday, then took Sunday off, pretty much. Just hung around the house, organized some things, did some reading, caught up with my email, and gave some family members a call.
One of my siblings is in the hospital, and I may need to travel to help them out. But it may turn out to be nothing. They’ve had physical disability issues for many years, and this is one more in a long series of troubles they’ve had. I’m not making light of it. They’re having all sorts of tests done. But it may turn out to be just a speed bump, rather than a sinkhole, in the road of their life. They’ve been through this kind of thing many times before, and we all know it’s a wait-and-see type of situation.
If I have to go, I’ll go. They may need me. But for today, I’m taking it easy.
I’ve got a late night tonight, so I need to get an early start on the day. I’m seeing my new neuropsych again. I’m bringing them up to speed on my childhood. They’ve worked with a lot of kids, in the past, and this will help them better understand where I’m coming from.
This is important for both of us. With my history of mild TBI as a kid, it can shed important insights on what shaped me into the person I am today. And it also highlights the differences between the world I grew up in, all those decades ago, and the world we live in now. I was telling my neuropsych about the time when I ended up on the bottom of a pile of kids during recess in 5th grade got my neck/head hurt. I knew I’d gotten hurt and after I crawled out from under the pile, I walked away in a daze, just walking across the field where we were playing, trying to put as much distance as possible between myself and everyone else, because I didn’t want to get hurt again.
After that, I didn’t want to play rough. I was confused. I was out of it. My grades dropped like a stone tossed into a pond. And the former A-student nearly flunked 5th grade. My teacher had to come to my house and talk to my parents about me not completing my work. They made me stick with it and complete my homework assignments, but it was a real battle for them, for many months. And I’m not sure I ever recovered from that experience. All of a sudden, I was stupid. I couldn’t think. Something was wrong with me. I wasn’t smart, after all. I was stupid. I couldn’t do it. I just couldn’t do it.
My neuropsych asked me if I’d told anyone about getting hurt. I said, no, that’s not how we did things back then. You just picked yourself up and went back into the fray. Another thing that I didn’t add, was that I was so confused, I didn’t realize there was a reason for me to say anything. I’d gotten hurt similar to that many times, while playing. It wasn’t new — that time was much more extreme, however. All those other times I got clunked on the head and was a little woozy, I recovered. But for some reason, that time was different.
And that just highlights the differences between how and when I grew up, and how things are now. Even if I’d told my parents or teachers, what could they have done? What indeed? Nobody knew sh*t about concussion or mild TBI or neck/spine injuries back then. If anything, I would have just been a hardship to everyone, because my parents didn’t have the money or the time (they were both working) to really tend to me.
Nobody had the time for me. And when they did try to help me, they did such a bad job of it, I thought I would have been better off just going it alone.
And it makes me a little ill, to think about how blind and bound by ignorance everyone was, back then. Living in the country, in a place where you were never allowed to admit any hurt or any weakness, but you sucked it up and got back in there. Because that’s what was done. No cry-babies allowed. No weaklings. No quitters.
So, I’m meeting with my neuropsych again today, and we’ll talk more about my childhood. I’ve got my box of favorite things I kept over the years. My parents cleaned out their attic years ago, and I got my childhood box from them. That and a bunch of photos of when I was a kid. School pictures, from first grade on. Other photos used to be in the collection, but I took them out, and I don’t know what happened to them. I think I put them in another photo album somewhere, but I don’t know where it is. I would like to find that. It’s classic, and it’s full of pictures that are worth more than 1,000 words.
Thinking about being a kid dealing with mild TBIs all on my own… it was pretty rough. And I got tired of being punished for things I didn’t do on purpose. That’s probably part of why I have trouble with authority figures. I’ve been punished and disciplined and pulled back into line by force, by people in power so often, for no reason that I could tell — till after the event was over. They probably thought I was being difficult on purpose, but I just didn’t know. I didn’t remember things they told me. I misinterpreted what they told me. And then they came down on me like a ton of bricks. Because all I knew how to do was put on a brave face and act like I was in total control of everything.
I wasn’t. But if I let on that I wasn’t, then I’d be vulnerable. And other kids or adults would beat up on me. Because they could.
It was terrible, when it was happening. But that’s just how everything was. That’s just what happened. And I dealt with it.
Now things are so much different. I still have residual resentment and distrust towards authority figures, but I’m dealing with it. I’m not nearly as bitter and angry as I ws in the past. And I have this amazing life that really keeps getting better. Standing at my desk, looking down at the bird feeder in my back yard, a young deer just appeared from the trees nearby and is looking for something tasty to eat. Beautiful. Just beautiful. This is all possible for me now, regardless of what has happened to me in the past. Maybe it’s possible because a lot of that happened.
I know for damn’ sure, I’m a heck of a lot more resilient than other people I know who never had awful things happen to them on a regular basis. I figure, my childhood was like the price of admission to this life I have now. And it’s paid off.
Being roughed up when I was a kid and being left to sort things out on my own… it wasn’t the most fun, but I learned a lot of lessons. And all of those lessons are helping me today.
Why not? We need more voices in TBI research land.
So this is my new blog – dedicated specifically to TBI research. I’ll be posting intermittently here specifically with TBI research in mind.
I’m both a technologist and independent researcher, and I’ve spent a huge amount of time since 2007, piecing together the fragments of truth about my history of mild TBI / concussion.
While I know that in principle, brain injury survivors (or patients in general) can’t reasonably be expected to have a clear, unbiased view of their own situation, it’s my sense that a huge amount of relevant insight (and data) is lost because formal research is dismissing or disregarding the perspectives and subjective experiences of those dealing directly with brain injuries.
My academic training was in the social sciences, including a few years abroad at a European university well-known for its academic rigors and cultural contributions, and it was drilled into my head (so to speak) that the subject of a study cannot possibly have a clear view of their own situation. You’re best off studying complete strangers who are entirely foreign to you. Hence, you’ve got Frenchmen marching deep into the Amazon jungle to study the Yanomamo, rather than exploring psychedelic pursuits in their own back yards.
Well, that’s all fine and good, but here’s the thing — I think they may be wrong about the clarity thing. What’s more, I’m not entirely convinced that any researcher can be 100% objective in their assessments. Being human and all, we’re each and every one of us subject to our own biases, and imagining yourself to be an uninvested bystander just opens you up to all sorts of assumptions. Your presumption and process-driven pursuit of objectivity blinds you to your own subjectivity. And that — IMHO — makes for shitty research of limited use to others.
Anyway, since I’m not affiliated with any academic institution, I’m not allied with any organization, I’m not governed by any licensing body, and I’m self-funded through my daily work in technology, I’m pretty much free to do as I please, read what I want (at least, the studies I can access), and make my own statements about them. I’m not beholden to anyone, I’m not under scrutiny by any oversight committee, and I have no professional peers to get me in line.
So, I can take a fresh look at research from both an outsider’s and an insider’s view. And I can say what I please — for the consideration of others. I’m an academic outsider. But I spent much of my childhood on college campuses with relatives who were professors, and I was basically raised by gregarious Ph.D.s, so I’m not leery of jargon (even when I don’t fully understand it at first). And I’ve got an insatiable mind that needs to keep busy, to keep out of mischief. I’m a TBI insider with tons of actionable insight into what makes TBI tick, and how to understand and effectively address it.
I know both worlds, so why not use that to my advantage? Others might benefit in the process, as well.
I just got done IM’ing with a relative whose daughter has fallen and hit her head twice in the space of a few days. That set off alarm bells with me, because her latest head trauma left a pretty big knot on her forehead, and it sent her to the ER.
And the child was running around like a crazy person, jumping and running and getting into everything — just like someone whose brain is not only agitated, but also very distractable. Another warning flag.
Then they posted a picture of her when the weather was unseasonally hot, saying that she was telling them she was cold. Okay, another red flag — feeling cold (or hot) for no reason is also a possible sign of a concussion.
So, after days of deliberating — one of the girls’ parents is a doctor who cannot abide having their authority challenged, so I didn’t want to step on any toes — I finally broke down this morning and IM’ed them about the possible warning signs of concussion with their daughter. I gave them some background and some links to read (click here to see what I shared), and I tried to reassure them that concussion is not the end of the world.
All I really wanted to convey was that she needs to rest. Even if her brain isn’t showing signs of concussion in imaging, she still got hit, and resting the brain is never a bad idea — especially after a few hits in a row.
I shouldn’t have been surprised, when I got back the message “She did NOT have a concussion! The ER checked her out and cleared her and assured us that she was fine! But thanks for your concern and the links – I’ll keep them for later reference.”
Sigh.
And so they cycle of TBI trauma continues. The injury is one thing — the aftermath of dealing with people who don’t understand, and are too superstitious or fearful to inquire further and learn for themselves… well, that’s where a lot of the ongoing trauma lies. Knowing what I know from personal experience about childhood brain injuries (I had a bunch, myself), I’m guessing that sweet little girl could have a long, hard road ahead of her. Her parents are in denial — to brush me back that quickly, that abruptly, just smacks of fear. And since they are extremely religious, my guess is that any neurological issues that child has over the coming years are going to be chalked up to “sin” and “character issues”. And my heart really aches for her situation.
Because I’ve been there.
Obviously, there are differences between us. Our family circumstances are different. Our parents’ professions are different. Our economic status is different. Plus, all brain injuries are unique, and all situations are unique, and all children are unique. I can only hope that we’re not similar in the most difficult ways, and she doesn’t have the same tough road to walk that I did.
Maybe she will be fine. Maybe the doctors (in a rural, remotely removed part of the USA) will prove right. Maybe there’s no cause for concern.
But if I had a dime for every parent who brushed off their kid’s head injury as “normal” and then proceeded to punish and discipline and belittle their child who had objectively measurable neurological issues, I wouldn’t need to work another day in my life.
And that just makes me ill. Fear takes over, of course. That’s human nature. And superstition steps in to allay the fears. Relying on the expertise of “trained professionals” — many of whom are NOT up on the latest developments around traumatic brain injury and recovery, is just another form of superstition and misplaced trust — and that opinion comes from plenty of life experience.
All I can do for that child, is hope for the best, do what I can to reach her parents, and leave the rest up to destiny. Or perhaps God / some Higher Power.
That little girl won’t be a child forever. She’ll grow up and have the chance to recover from all the mental and emotional abuse and neglect. She’ll reach majority age (I sincerely hope) and have access to tools and approaches that can — and will — free her spirit from the cage I see them building around her. She won’t be a hostage of those blind and fearful people forever. Eventually, she’ll become an adult who can make choices for herself, who can decide on her own, what direction to take, and she may do just that.
Only time will tell. But for the time being, I’ve got to get my mind off it. It’s too distressing, and I still have another day off, till my regular life resumes, as per usual. So, I’ll take my walk in the woods, think about the things I want to think about… and hopefully wear myself out enough to get another nap. I’ve had a headache, on and off, for the past month, and yesterday it bloomed into a derailing migraine. The worst thing is, it sets in after long naps — just when I expect to be 100% with it, I get set back.
And then I feel like crap.
Well, I’ve felt like crap — depressed, on and off — for a couple of months, now, and it hasn’t stopped me from living my life. Depression for me is like bad weather. I just adjust to the conditions, equip myself to deal with it, and get on with my life.
Sometimes I get a little “wet” from it all, but it passes. Damp dries out. The depression passes. And eventually things come back to some semblance of normal.
10. Plenty of other people have had mild traumatic brain injuries (concussions), and most of them are getting on with their lives.
It’s not the end. It may feel like it, but it’s not
Brain injury / concussion is extremely common – millions of people in the US experience once each year, and many more experience them globally.
Getting clunked on the head is something as old as the hills. If it were catastrophic every single time, the human race would not have survived. So take courage – you’re in good company.
While brain injury recovery can be time-consuming and there are no hard-and-fast guarantees, rest assured that many people have bounced back after concussion and gone on to live productive, satisfying, fulfilling lives. Those who haven’t had such an easy time are in the minority. And while I am a member of that minority, I can tell you that even the long, hard road has had many blessings along the way.
You may notice some changes in your personality and abilities, but some of the changes may be for the better. I know that in my case, overcoming all the difficulties of symptoms and blocks that were put in my way trained me to persevere and be diligent – and also to pay attention to important signals that I was screwing up again and needed to make a course correction.
Nobody wants to injure their brain. But when it happens, there’s a lot of useful lessons to be learned. And those who learn and adapt, are the ones with the highest success rate.
You can be one of the successes. No doubt about it!
What to do?
Be patient.
Pay attention.
Be the best person you can.
Put forth your best effort and learn from all your mistakes.
And remember: This is not the end.
Did you know there’s a Kindle eBook version of this post? It’s expanded, along with the other posts in this “Top 10” segment.
You can get it on Amazon here – $1.99, instant download
It feels like no one understands… and heck if you can describe it to them
Yep, it’s unpleasant. Yep, it can suck. And yep, it can take a while to get all figured out.
It’s practically impossible to explain to others what it feels like to have post-concussive symptoms, and it can be almost as impossible to convince other people that concussion / TBI is a thing. Heck, I have long-time friends and family who still refuse to believe I have any issues – and I’m not the only TBI survivor who has that experience.
Never mind that. Just take care of yourself and pay attention to your own recovery.
And don’t lose hope. I had just about given up of ever feeling normal again, when suddenly I felt like my old self again.
It brought me to tears.
It was amazing.
And it comes and goes.
The thing to remember is that, through the course of life, we never ever stay the same person. We are constantly changing, constantly growing, and expecting ourselves to stay the way we were “before” isn’t realistic.
It was never going to happen, anyway. Even if you hadn’t gotten injured, life would have changed you in some way. You would have lost or gained many, many things (and people) along the way, and those experiences would have changed you, too.
Just be aware, that brain injury / concussion isn’t the kind of thing you can rush. The brain will take its own sweet time.
So, buckle up for the ride of your life!
What to do?
The best thing you can do is be patient with yourself and be aware of the ways that you are not functioning as well as you would like. Make a note. Try again. And keep learning.
Don’t rush it. These things take time. Eat healthy food, stay away from a lot of junk food, sugar, caffeine, and stress, drink plenty of water, and get lots of good sleep.
Exercise can also help a great deal. It reduces stress, and it gets your mind off your brain for a while. The times I’ve felt best, are the times I’ve been exercising regularly – even light exercise for 10 minutes at the start of each day. Just don’t overdo it. Recovering from an injured brain is hassle enough, without adding an injured body to it.
Did you know there’s a Kindle eBook version of this post? It’s expanded, along with the other posts in this “Top 10” segment.
You can get it on Amazon here – $1.99, instant download
Broken Brain - Brilliant Mind 